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dawnpereda
@dawnpereda

Posts: 13
Joined: Sep 27, 2017

Adult Life after a Traumatic Brain Injury (TBI)

Posted by @dawnpereda, Wed, Sep 27 11:17am

Hi, My name is Dawn and I am an RN. Just over two years ago I received a work related injury. This injury has left me with a traumatic brain injury (TBI). Even though two years have passed, I still suffer with lingering tbi symptoms. I have some issues with memory. Some things I remember with no problems, other things I just don’t remember and I can’t explain why… I also suffer with issues related to mood dis-regulation. I can be angry at times and not understand why or end up having explosive outbursts. This has greatly impacted my life. I still work but no longer with patients. Also, this has been a huge turn around for my family. I’m no longer the mom who has everything under control. I used to work full time, manage my kids’ schedules, pay household bills, and keep my house clean. Now I struggle to remember to brush my hair before leaving for work. My husband pays the bills and my kids write their schedules on a large calendar (that hangs in our dining room) so I can visually be reminded where they are and what they are doing. I am a “new” me and I never would have imagined this journey for myself.

I know there are things out there for youth that suffer from concussion/tbi, but I don’t always find a lot of discussion/support for adults, like myself. I get up every day and work to live my life to its fullest. If you would like to know more about my life and journey, you can listen to a podcast that I did with my family. Its called “Terrible, Thanks For Asking”. We’re season 1, episode 5. Its brutally honest. If any of this rings true to your life please join this discussion with me. Thanks for your time!

REPLY

Posted by @colleenyoung, Wed, Sep 27 11:50am

Hi Dawn, Thanks for starting this discussion. We have several members on Connect talking about living with and recovering from brain injury as an adult. I’d like to invite @kdubois @carnes @matttheschmatt @lakelifelady @beemerw47 @jnewburn @suzyann @techi @danmlee @oceanfun1 @janneg and @david33 in this discussion group about TBI.

Here’s the link to Dawn’s podcast “Terrible, Thanks for Asking” https://www.apmpodcasts.org/ttfa/2016/12/help-me-remember/ Here’s how the podcast starts “A quick warning: this podcast contains references to sex, suicide and strong language…”

Dawn, as a nurse and uber-mom, it must be such a challenge to accept being the person who know longer has the oversight and everything under control. What things help you find peace with that or is that not possible right now?

dawnpereda
@dawnpereda

Posts: 13
Joined: Sep 27, 2017
Posted by @dawnpereda, Thu, Sep 28 10:10am

Colleen, thanks for your help getting this going. I can’t say that I have peace in my life. This injury has effected every aspect of my being. Since you cannot see my injury its more of a struggle. I’ve had people (even my employer) say that I’m faking my symptoms. What they don’t see and can’t understand is the struggle I live every day to be as “normal” as possible. Because of this I try to give a voice to myself and others in this journey. I know I’m not alone in this but yet I don’t know where to find others like me.

I still strive to be the “uber-mom” but fall short every day. I think the hardest part of this injury is that I remember how I used to be, and no matter how hard I work at it I just can’t get back to that person. So I work on accepting who I am now. I try to read for pleasure and I spend time alone. Those are my coping mechanisms.

lakelifelady
@lakelifelady

Posts: 18
Joined: May 04, 2012
Posted by @lakelifelady, Wed, Sep 27 1:17pm

Dawn, I am 73 yr old woman. II listened to your pod cast and have experienced similar difficulties after a car accident in 2015. My life too, has not been the same since the accident where I had two brain bleeds most likely made worse by my taking a blood thinner after having an MI and stent placement five months before.
It took a long time to recover because I also broke my neck, six ribs and had compression fractures down my spine.
At first I had anxiety attacks daily which soon became PTSD. Being immobile in a turtle shell cast with a neck brace made my emotional reactivity worse. I had neurologists do cognitive testing and my Master’s Degree in Counseling Psychology where I had led a busy professional life was not so evident. I still have trouble with complex life tasks like filling out forms, figuring out the steps to take to finish a task and I refuse to read through insurance or tax documents because it is just overwhelming and I am likely to cry.
Loud noise, a room full of talking people and bright lights give me trouble and I am likely to get dizzy and light headed. Stage plays overwhelm and events like weddings, funerals are so hard to attend and I am exhausted after.
Seeing a car accident sends me into a high anxiety state and I am likely to cry uncontrollably. Sometimes something is mentioned that sends me into a flashback state of sobbing and shaking. Nights can be full of waking up with high anxiety.
Riding in a car is nerve wracking because I over react to situations. I get car sick now and am dizzy when driving or riding.
When going for a walk I sometimes lurch to the right or feel like I have a bobble head.
I have to write everything down or I forget. You know the routine. Yesterday, I left my purse in a shopping cart. Luckily for me an honest gentleman turned it in.
There is more but that is enough for now but I need to tell you my coping skills.
I walk daily and use a stationary bike daily. I listen to soft music and do visualization of happy, healthy, holy. Grateful, gracious and grounded.
I sing in a chorus, play the piano and flute and read. I could not finish a book at first but now I am able. I follow athletic events. Go to church and sing in the choir and have taken up water color painting. I get exhausted easily and must rest often.
Lakelifelady

dawnpereda
@dawnpereda

Posts: 13
Joined: Sep 27, 2017
Posted by @dawnpereda, Wed, Oct 11 2:13pm

Thank you for sharing your experiences on here with all of us. I appreciate your input. I also get very tired by social activities and require far more rest than ever before. I am grateful to still be active in life and some-what independent. I’ve been telling myself that I’m doing better but had a reminder yesterday that perhaps I was not being honest with myself. I lost my car yesterday. Since my brain injury I have trouble with “way finding”. Basically speaking I forget where I am, where I’m going, or where I parked my car. I had made notes on where I parked but they didn’t seem helpful when finding my car. I’m thankful for helpful co-workers who know of my injury and were willing to help me locate my car. Thank you for sharing your experiences and for also sharing what helps!

Lisa
@techi

Posts: 154
Joined: Jun 18, 2017
Posted by @techi, Wed, Nov 8 11:56am

I also remember when l first came home after my TH I l cried because l didn’t know my house and that l had children. Then one day my therapist took me to the grocery store to see what l remembered. I cried because there were people around and it was to overwhelming. I didn’t know how to do house work or cook. I also couldn’t take hearing loud noise and too many people talking frightened.me. Then one day l was told l was strangling my daughter and l really didn’t know what l did then l was sent to the mental hospital. And l can remember only one time being there. I guess it was the drugs l was given. Then l was discharged. Then everything after while seemed ok. I was reading doing math and my speech therapist helped me to do these things. Then once again something happened again l fell on an antique table and hit my head. I wanted to go home because when l hit my head we were to fly back home. My mother and l did and l was told l did something else l am not sure. I was told when we got off the plane they took me straight to the hospital and l kept calling my therapist name and she came and Then l was transferred to another mental hospital. I came back out and l was put on stronger antidepressants from 1997- 2014. I had another attack with my brain injury. Viral encephalitis first and then autoimmune encephalitis and all the things l was going through were symptoms of autoimmune encephalitis disease and at that time and still today doctors don’t know about it and they think it’s a mental problem when it’s actually all the signs of autoimmune encephalitis disease. Then l had a 4hr test for memory and then a PET for dementia and they all came back normal. So l prayed Lord give me my memory back. I listened to music and watched wheel of fortune. When l read the bible or hear the preacher speak l couldn’t comprehend or remember as soon as l got out the church. Now l can read and understand what l hear and not frightened of my surroundings but now in the times we are living in we have to be aware so that is normal. Now l haven’t been driving for a year because they didn’t know what was going on with me so l have to tell doctors go to about my illness and the symptoms but l am doing great and they can’t believe it but God is not surprised. And just recently l read about 2 people who went through the same thing and were treated the same way and also placed in mental hospitals. So it takes time and lots of prayer. And don’t be hard on yourself because all of this is normal and it will get better.

Posted by @hopeful33250, Wed, Nov 8 12:17pm

Hello Lisa, @techi

What a remarkable story! I appreciate your sharing this information on Mayo Connect.

Teresa

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dawnpereda
@dawnpereda

Posts: 13
Joined: Sep 27, 2017
Posted by @dawnpereda, Thu, Nov 9 8:31am

Lisa,
Thank you for sharing your story! I am often amazed at what a person can go through because of a brain injury. As an adult, I feel that, our symptoms are viewed differently or may not be seen for what they really are. I’m so glad that you stayed strong and got through some very dark times. Love and support from family can be so very helpful. Belief in a higher power also carries me on a daily basis. I spend a good portion of my day “talking” to God. I try to be thankful for what I have and to not spend too much time grieving for what I have lost. Some days that’s easier than others. The last sentence of your post is so encouraging!

carnes
@carnes

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Joined: Aug 03, 2017
Posted by @carnes, Thu, Sep 28 5:41am

Hello, wow your story is similar to mine. But I can’t even remember certain words to say what I mean. I was a physician’s assistant and a lab tech, also medical terminologist. Use to be in charge of the nursing staff. Now my mind is like mush, confused at times, sentences are difficult. I cannot help or be the mother I use to be, it’s soooo frustrating. I’m exhausted all the time from not sleeping well etc. Much more

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lakelifelady
@lakelifelady

Posts: 18
Joined: May 04, 2012
Posted by @lakelifelady, Thu, Sep 28 7:51am

Yes, the word thing. Sometimes an out of context word will pop out. I do a lot of posting on FB just to keep writing and thinking and replying. We live out on a lake so conversational opportunities are somewhat limited. I play Bananagram a word game much like Scrabble with a dictionary close by to help me. This game can be done alone, which I prefer because I have trouble keeping up with others.
You have family still at home which I envy a bit. I know how difficult that must be. When our three grown sons come back for lake life activities in summertime everyone knows that Grama cannot keep up. We also have adult grandkids now who step up.

dawnpereda
@dawnpereda

Posts: 13
Joined: Sep 27, 2017
Posted by @dawnpereda, Wed, Oct 11 2:20pm

Your post rings true for my life and many others. Please remember you are not alone, and I am so glad you shared with us. Such a difficult journey with no absolute idea of how we will fare through any of this. I consider life to be a mystery and everyday to be a gift. Sometimes it all feels new, even though I’m sure its not. And often times I don’t understand everything around me, but I’m still just so grateful to have this life to live. Thank you for being part of this!

Lisa
@techi

Posts: 154
Joined: Jun 18, 2017
Posted by @techi, Wed, Oct 11 1:26pm

Hi Dawn l had a Bri in 1997 and your a nurse so you know about viral encephalitis. I had and still have a little memory issues. When l first got out the hospital l didn’t know my house or children so l had to relearn everything. My children were young and l was working 2 jobs. I didn’t have to but l worked at the hospital and they were just like a part of my family. I worked also at the secretary of state office. And l thought you couldn’t terminate someone with a disability. I worked so hard with my speech therapist to relearn things l should have learned with a occupational therapist but l did still have problems with my speech. When l went back to work l could feel they were going to get rid of me and they did just that. My supervisor at that time told me her husband got disability and l could get the same. That was an insult to me because l have worked ever since l was 13. Well l had the same issues with anger and l was depressed. My husband and l had moved to a new house with five children and from having three incomes to one was alarming to me. Oh and l brought a new car. I didn’t know if we would eat, lose the house and car and maybe the children taken away because we weren’t going to be able to support them. But until this day l still am thanking God because even though we had a storm in our lives we didn’t lose anything. So l did beat my daughter and accused her of getting pregnant. But that was because l wasn’t taking my meds but she did become pregnant twice with different guys and she would always lie and steal. My oldest son was going to college for awhile and his girlfriend now wife kept him from that. And he left our house to move in with her family. Then my middle son after he graduated from high school didn’t tell us he signed up for the military and when he graduated they were there to pick him up for boot camp. My youngest son also went enlisted and we knew he was going to do that but he got married to his girlfriend now wife before he left. And her mother and stepfather took them to the justice of piece and we didn’t even know it. My husband and l was going to real estate school and my middle son’s supervisor was telling us about it but didn’t know it was my son but God let me know it was him. My youngest daughter after she graduated from college she told us she was closing on her condo and living with her boyfriend which is now her husband. So the doctor thought l was so depressed after the Bri that l was put on antidepressants for years. I always would watch wheel of fortune to help me with some of my memory and l was driving. I went to college and received my diploma as a occupational therapist assistant in 2011. I kept falling because of my mobility and my eyesight was getting a little bad. When l was doing my clinicians l thought l wouldn’t be able to do it because of my memory and it wasn’t easy but you know God was with me. I had to write down notes to remember and when l would write them l wouldn’t be able to remember where l put them. So now l have an app and l put my meds in it to remind me when to take it. I journal things l hear doctors say and also what l am suppose to do for the day. My doctors appointments and how l feel for the day. Also my weight, blood pressure, headaches and so forth. Which l find out everyone forgets at some point. If they say they don’t well that was a good lie for the day. So in 2014 l went on a women’s convention with the church. My daughter had my granddaughter while l was away. When l came home she brought the baby over and l was holding her and thank God l gave her back when l did. I fell back and that’s all l remember. My family told me they thought l overdosed on my antidepressants because l had 3 different strenght in my pill box. I knew that wasn’t true. I just kept my pills in my pill box because my psychiatrist kept changing it up and down because l couldn’t sleep sometimes. So they gave me so many meds that l became allergic too and l was only allergic to codeine. Now l am allergic to so many drugs they are scared to give me anything. So they took me off the antidepressant and now l don’t take any. Then l had elevated ammonia. And before I never had anything wrong with my liver. I use to get my liver checked while taking the antidepressant. So l was put in icu and this had been my 2nd time since my Bri. I wasn’t doing so good and they didn’t know what to do with me. So they wanted to send me to a nursing home but the Lord instantly blessed me to get out of what was happening. I went to rehab to help with walking, memory, occupational therapy and speech therapy. I did very well. This was the 3rd time l was in inpatient rehab and so many times in outpatient because of balance issues. So l prayed to God about restoring my memory and now l am able to remember more things. Plus l had so many diagnoses in 2014 l didn’t know what was going on. I do have extra veins in my liver because of medications and seizures that l was told l had from my first neurologist who l trust. I really think it might have been allergic reactions or l was completely healed from them. I like the second one better. And then l was told l have depression, anxiety and conversion disorder but if a person really know what a person goes through with a Bri then they would think twice. Sometimes doctors are quick to diagnoses instead of trying to find the answer and we are quick to give meds also. And we categorize everyone the same. So now they are starting to see the misdiagnosed l had to endure but we all learn from our mistakes. And you just can’t be hard on yourself. I learned in school that we have scales where everyone one should be. I ggmj1btdfkmjy your one year old you should be walking and saying 4 words or so. Well that’s not true we all learn differently. When l walked l was over one because my father would always pick me up not because l was not on the scale. If my patients didn’t go to college or was on drugs don’t mean l am going that way. They thought l had dementia because it’s in my family line but l knew thatvwasnt so. And l wasn’t going to except that. The doctors know l won’t accept everything they say because they don’t know everything. And you can get all or most of your memory back. And if you really want to be honest everyone has something wrong with them we are not perfect. So each day try something new it might take a week or a month or forever how long just don’t give up and don’t let anybody say you can’t. Good luck.

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dawnpereda
@dawnpereda

Posts: 13
Joined: Sep 27, 2017
Posted by @dawnpereda, Wed, Oct 11 2:06pm

Thank you so much for your post! I feel stronger and re-assured by each post that is shared on here. You have had such an intense journey. Your faith and your belief in your self seem to have really carried you through this. I had to laugh when you mentioned Wheel of Fortune. I used to watch that show but since my brain injury I am no longer able to solve the puzzles. I now get through my days with sticky notes and journaling, also. Its not the future I would have planned for myself but I trust God will put all of my experiences to good use! Thank you for sharing your brain injury and recovery with us!

ujeeniack
@ujeeniack

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Posted by @ujeeniack, Sun, Oct 22 8:00pm

LOW LEVEL LIGHT THERAPY (red light) MIGHT HELP. IT WORKED FOR A FORMER SENIOR AT MY PLACE AFTER A CAR ACCIDENT.

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dawnpereda
@dawnpereda

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Joined: Sep 27, 2017
Posted by @dawnpereda, Mon, Oct 23 10:33am

Thank you for your suggestion. I appreciate all the input. I figure by reaching out we can help one another on this crazy adventure we call life!

Lisa
@techi

Posts: 154
Joined: Jun 18, 2017
Posted by @techi, Mon, Oct 23 10:35am

Amen you got that right John

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